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To paraphrase yourself: sure, it’s also possible that you’ll feel better from eating a banana. What happened to getting people to stop wasting resources on trialling things without any good arguments for why it might work? I agree that studying healthy people isn’t useful here.

Uhm, what do you base that on? Is watching their HR during stress exposure, being told to use a breathing app and visualising a calm place supposed to be helpful for severe pwME/CFS that struggle to eat?

There is a three month feedback period. I’m not sure how the associations intend to respond, and what they will put the most weight on. I doubt it. The people involved from the department don’t seem to fully understand what they are doing. They seems to believe that «clinical experience» and...

This is from the section where they talk about the most severe. There is no mention about deaths. These are back to back paragraphs. It feels like it’s written by two different people. Is this what compromise is supposed to look like?

It’s correct in Norwegian, the autotranslation messes it up

«Our arbitrary scale matches other arbitrary scales so our scale has good validity.» I wonder if they will ever learn..

The guidelines are packed to the brim with BPS and misinformation. It’s truly a muddle.

Partially because even basic scientific concepts are not includes in their training. Just looks through the publicly available subjects for medical degrees at universities. For the same reasons that any other profession don’t call out each other, take your pick: loyalty to their peers...

This is far too passive. The first thing they should do is to chastise every practitioner that thinks that checking off certain boxes means you have X, Y or Z. They should tell them in no uncertain terms that false positives are a serious issue and that anyone ignoring it are doing a disservice...

I take it to mean that if the advocates of the patient community continue to ask for the wrong things, we are guaranteed to get the wrong things. If we ask for the right things, there is at least a chance that some sane people in power listen and give us the help that is needed to turn things...

It’s probably by design. They are already using the intervention based on their so-called clinical experience and this is nothing more than a charade that they believe lets them claim that what they are doing is backed by science.

Oh joy, more PROMS! There are none, except for the ones that treat the root cause: the disease. Even more PROMS and psychosocial babble. Are they aiming to create some kind of support for anyone with untreated fatigue, as if it’s all the same?

If the authors are not able to recognise the serious content validity issues that these PROMs face, I have little faith in the assessments in the review.

Uptake is always low for any kind of surveys. I don’t think these ones are outliers.

To elaborate on this: The problem with all of the other names is that they might be taken to imply that we know a certain kind or deviation from the normal is present in the disease, when we don’t really know that. It seems to me like saying it’s a «neuroimmune disease» would be the best...

WGS’s don’t require billions of cases. It seems like you can get by with 10-15 thousand. All of those steps would also have genes influencing them, making it more or less likely that you end up with ME/CFS. But I feel like we’re getting a bit off topic for the thread, which was small genetic...

If we go by JE’s assessment above, it looks like it didn’t really work, which strengthens the argument that the intervention effectively broke the blinding in the intervention group. Exactly. And it doesn’t seem like it worked in any particularly meaningful way, which would further strengthen...

I don’t follow. If one gene makes it more likely that whatever ME/CFS is occurs (say fewer microtubules), then that will show up in a large enough genetic study because the people with that gene will be overrepresented in the ME/CFS group. That’s different from this kind of study, though. I’m...

Those statements are about «people that perceive themselves as advocates» that constantly bring up fringe and pseudoscientific muddle. Advocates as in people that have taken it upon themselves to speak on the behalf of a group, or that take it upon themselves to share «facts» with others about...

Why do we need to find names with that level of granularity before we know what’s actually going on? Wouldn’t «neuroimmune» suffice for now?